If there is one word I would use to describe the last year or so of my life it would be this - Helpless. I lost a daughter-to-be, I lost my way to an extent, but most of all I lost my wife. She's still here, she's still my wife, but she's so damaged, so hurt, broken in so many ways and honestly, I have absolutely no idea how to fix her.
Like any husband, all I want to do is make it better, take it all away. I would run through brick walls to make that happen. I would work night and day. I would go through torture of your choosing (as long as it's not Nickelback, please not Nickelback). But none of that will help. We are fighting an enemy that doesn't respond to force. Worse, I'm not even allowed to engage the enemy. I'm restricted to support crew, back from the front lines. I know I wouldn't like the front, that it's a horrible place, but the woman I love is up there, fighting, hurting. And all I can do to help is bring her dry toast.
When Annamarie first started feeling sick, during both pregnancies, I was all over it. Stroking her back, holding her hair while she vomited, emptying her vomit bowl, waiting on her hand and foot. But the thing nobody tells you, and that the movie montages of pregnancy and "morning" sickness (can we lose that stupid fucking name already? Does anyone actually get sick only in the morning?) is that it's not just one day or one week of this shit - it goes on. And on. And on. Every. Single. Day.
I'm can't complain. Well OK, I can. I guess I have a whole blog to do so. But I know Annamarie had it worse. She had to suffer through it every day, not being able to eat, feeling weak, feeling useless and ultimately just feeling like crap-ola. I get that. And I truly wanted to help. I still do. But there comes a point where it just becomes part of your daily routine. Get up, brush your teeth, watch the wife vomit her guts out. You accept that you have to do all the dishes, and the washing, and keep the house relatively clean, and feed and clean your child while he asks you why Mum can't do it (yes, I know single parents do all of this without any help. If that's you, you're awesome. I am genuinely in awe of you). So, you accept that have to wait on your wife/patient hand and foot, and bring her what little food she can eat and make sure she's drinking enough water and change the sheets when they get too whiffy - not that she smells, but when you're living your entire life in bed and you're a vomiting mess, things can get dirty awfully quickly. You accept all this, and you do what needs to be done.
But sometimes you miss the other part. The unseen part, that can't be solved by getting the specific food she wants right now, or cleaning the toilet so she doesn't feel icky about it. You're doing so much practical stuff, you forget that this constant need, your 24/7 patient, is also a person. And not only that, they're supposed to be the person you love, deeply, passionately, romantically. And they can't stand the smell of you. After a few weeks you've stopped holding her hair back while she vomits - she's doing it every couple of hours, so it's just not sustainable, especially when you've got a pileup of vomit containers to wash from her last few efforts. After a month or so maybe you start to drift a bit when she complains (perfectly reasonably) about how she feels like a big sack of crap and doesn't think she can do this any more. You care, but what can you do about it? It's just a shit period of our lives we need to get through.
And that's what it becomes, really. An endurance event. A marathon on your last legs. You can't communicate, not really, you're too tired for that. All you can do is put one foot in front of the other. And the person you're dragging along is upset and you get that but if you stop to talk about it, you're not sure you'll be able to get going again. And you can't help anyway - they're going to vomit again whether or not you sit down for half an hour and nod while they tell you how awful it is.
So now you are essentially alone. Fighting your own war, battling your own pain. But you've forgotten - now they are alone too. And then something happens, maybe big, maybe small, and you have a little fight or maybe a big fight, and you realise you've walled yourself off from each other, out of self-protection or selfishness or whatever - but it's happened. There's a distance there, and now that you see it, it hurts. So you start trying to close the gap. You try to listen more. You make a point of stopping, of sitting down, of not rushing everything. Sometimes you still fuck it up, and sometimes you fight about that. But you keep trying. You summon all the sympathy you can, and you fake the rest. She'll never notice (until you write a blog about it - oops. Sorry hon). You make marriage part of your day again. You still feel helpless sometimes, but you focus on the things you can do, the actions that are within your control. It's not perfect, but it's better than the alternative.
Supporting your spouse is different from anyone else. With your child, you're supposed to be the bigger person, you're supposed to know more (you are, quite literally, "the adult"). With a friend, or sibling, you can have a certainly level of impartiality. You don't want to damage your relationship, but you can probably afford to be blunt in some ways that a little bit of distance allows. When it's your wife - well, at least when it's my wife - you live with them, they are part of every single bit of your life. You've grown together, changed together. The two of you are intertwined in ways neither of you fully understand. You love them deeply, but you also rely on them - and when they're out of the game, that's tough. You see other people helping them, and that makes you happy, but it also makes you feel guilty - why couldn't you do that? Why aren't you able to be everything they need?
We are not "done" with our journey yet. I'm not sure you can ever really be "finished" or fully "recovered". Recovery suggests getting back to some state that you were in before - but there is no going back. Annamarie is still suffering, both physically and mentally. And I am still on the sidelines, trying to help but never doing enough, because there is no game plan for this. But I keep showing up, and I keep learning, and every day we get a little better, a little wiser, things get a little easier. Sometimes they get harder too, because getting better isn't a linear thing. Some days I feel worse than I did the day we lost our baby, and I have to remind myself of all the good days we had before and after that one.
Annamarie has this thing when she's sick or relying on others where she apologises and feels super-guilty about it. I'm forever telling her that it's crazy, that the kindest thing she could do for everyone (including me) would be to focus on looking after herself - put your own oxygen mask on first. But then of course, like most humans, I'm blind to my own advice. I beat myself up about the things I mess up, the times I don't think before acting, the times I'm unnecessarily grumpy about something stupid. I know I'm not a perfect husband. I don't always listen as well as I could, or read situations correctly, and sometimes when I'm away from home I can forget what's going on there and that my stress at work is not the only important thing in the world. But I can claim one thing - I show up. Whatever happens, whatever I've screwed up lately, I come back and try again. And I think that's what support (and marriage) is about in the end - you're not going to have the perfect thing to say, the words that will take the pain away for that person you love, because there are no perfect words. We know this better than most. But what you can do is show up. Just be there, acknowledge the other person's pain, their being, and show that you care enough to be there too.
Some days I cope ok, or I tell myself I do. But then there are the days that I don't. And those days actually stretch past a day, into multiple days and I think that's what you'd call a slump. Anything can trigger a slump. For me it's been a comment someone's made, normally someone who doesn't know me well and asks if I'm having another child or if I have "just the one". It could be a song, or hearing other people's pregnancy news. Or passing a milestone, like an event we'd planned to have our baby with us at. And then there's the unforeseen triggers, things that I have no idea why they set me off - I get so angry so quickly at stupid things and then I hate myself for it.
Since agreeing to see a psychologist earlier this year I've been learning about what the impact of my physical journey has had on my mental health. Specifically, my central nervous system. As I understand it, your body has this memory of trauma, so you may not even be aware that your brain is trying to protect you from potentially harmful situations. Hence the panic attack when I had a gastrosocopy. I've learnt that my "down days" are actually my body trying to recover from what I'm told is a "cluster of traumas", to get back into a restorative mode. It's understandable to think that just getting through a normal day is overwhelming at times. I know that I'm not depressed - I'm only just above the "warning" level - definitely not warranting medication. I still find joy in my son for instance. I can occasionally laugh. I can enjoy a good meal, a sunny day.
The biggest concern, however, is my body's stress response. I'm "off the charts" for that one. Things that previously wouldn't have phased me now provoke a physical stress response - a tightening in my chest, a lump in my stomach, breathlessness, extreme anger and frustration. At the moment I'm trying to understand how to recover from this. How to "retrain my neural pathways" to think positive thoughts in stressful situations, to visualise positive responses to things. It's definitely not a quick recovery. Like the rest of our bodies, the brain is a muscle that needs to be worked. The rest of my body lost muscle, tone and conditioning through my extended period in bed last year. Similarly my brain lost control of my emotions. My subconscious took over in regards to protecting me from another traumatic situation. So I need to think of my brain as another muscle to exercise - add it to my daily to do list. Getting over a trauma - a loss of someone close to you, an accident, even a break-up can take much much longer than anybody anticipates because the brain is designed to protect us - fight or flight, right?
Our society prides itself on pushing ourselves - who works the most hours, has the most stress, can fit the most into their schedule. We're a culture of copers. But why? Why are we doing this and what effect is it having on our mental health? I'm learning that I need to start putting myself first. Stop saying yes for a change, work on "refilling my tank". It's another part of my journey, the part I didn't anticipate. Feeling physical anxiety and stress is something I've never had to deal with before and now it engulfs my life, my mental recovery is this elephant in the room, it's living in with us and we didn't invite it to stay. It shapes all the interactions between us as a couple, it dictates how I react to situations with my son, how I respond to requests from friends & family. But the biggest thing I'm learning is that it's okay. It makes sense that my mental state is tied to the awful physical recovery I've had and continue to have. It's normal to feel this way, we just don't often talk about it or have the ability to deal with it. Grief and trauma happens to all of us, but how we recover from it and move on with our lives is what matters.
If you think someone you know would benefit from following our journey, please feel free to share our posts. The feedback so far has been amazing and we really hope that by talking about grief, specifically pregnancy loss, that we're able to reach people who are struggling so they know they are not alone. We really appreciate everyone reading our posts and following our story.
This post follows on from our last one about genetics where we learnt about Nick's super mutant power of poor sight. If you missed it, have a read here
I was four years old when I got my first pair of glasses. Apart from a brief stint in my late teens when I felt like social standing was more important than ACTUAL BLINDNESS, I've always worn them. I guess they're a part of my identity, although I don't think of them that way. I actually feel more natural when they're off - when I'm in the shower, or swimming, or laying down to sleep and I can run my hand over my whole face without touching anything artificial.
I know other people think of me as a "glasses guy". I'll often get comments if I'm not wearing them for one reason or another - "I didn't recognise you without your glasses", "wow, you look really different", "are you wearing contacts now?" (I can't get contacts due to the nature of my condition). Since having eye surgery, I even have to wear protective glasses when playing sport, which earns me schoolyard-style "banter" from the opposition and the occasional black eye when I catch a ball to the face (since the edges of the glasses create a nice round impact spot). So it's safe to say, glasses are with me for life.
Sam is four now, and he just got his first pair of glasses. He hasn't had them long and still every time I see him wearing them, it stops me short. I don't know if it's parental concern, sympathy, guilt, or some kind of echo of my own experience that gets me - but it makes me sad, angry, nostalgic and filled with love for him all at the same time.
We only started noticing problems with Sam's vision recently. He was clumsy, walking into things and falling over, and he would occasionally go a little cross-eyed. I wonder if we were slow to pick it up because we were distracted with our own stuff. Or maybe because he's always been a little clumsy, given his size (he's a big lad, in a good way - unlike his scrawny Dad). Or maybe it just wasn't easy to recognise. Either way, we got him checked and the doctor confirmed he has a lazy eye, so he'll need glasses and probably patching (yarrr pirate child!) later on.
I am glad he's getting the help he needs, and the doctor thinks he may not need glasses in the long term - but it still makes me uncomfortable seeing him wear them. I remember getting picked on at school for my glasses. I remember breaking them in fights. I remember picking fights or taking on impossible challenges just because I felt like I had to prove I was tough enough (this probably still informs some of my behaviour today - tell me I can't do something and you better get ready for some bloody-minded blind determination).
I remember embarassing moments. I played cricket all the way through school , and seeing a small red ball on green grass often proved a challenge (if you're even mildly colour blind, these two colours do not mix well - or rather they mix a little too well). Combine that with the fact I only had one good eye (so my depth perception was pretty poor) and it's a recipe for Chagrin Soup.
I was a fast bowler, so most of the time I was throwing the ball at other people (I wonder would I have ended up in that role if not for my vision?) so it wasn't a problem. But I still had to field (try and catch the ball) and occasionally bat (try and hit the moving ball against other fast bowlers, whose heads I had previously ruthlessly tried to crack open, so they weren't letting up).
On one particularly memorable occasion, I was standing in the field, praying nobody would hit the ball near me, when someone did. It landed somewhere in the outfield, but it didn't cross the boundary line, so the ball was still in play. I had lost sight of it for a moment, and now it was somewhere in the long-ish grass that makes up the edges of a schoolboy cricket field in NZ. I couldn't see it. I had absolutely no idea where it was. I ran in the general direction I thought it must be, given the flight and bounce of the ball. I searched all around, but i just couldn't find it. Meanwhile, the batsmen are still running, racking up the score with occasional furtive glances in my direction to see if I was playing some kind of joke. The opposition bench started laughing. My team tried to help. They were yelling directions to me - left, right, this way, that - but ten other people all shouting instructions at the same time doesn't exactly result in clear direction. Eventually, another fielder ran over. He grabbed the ball (it was about 2 metres to my right) and threw it back, ending my ordeal. Mercifully, the coach subbed me off. I was crying, as quietly as I could.
I don't think about my vision very much these days - it's got to a point where it's good enough that people don't really comment on it, though I still get the occasional question about why I'm winking at my computer screen (I tend to close my left eye when I'm concentrating, since it's basically blind and not helping me at all). In fact, since my condition is so rare, my vision makes an interesting talking point in certain social situations (I always win those work "ice breaker" things where they ask you to tell the group something they don't know about you). I'm in the Lancet medical journal (or at least my left eye is) We have a photo block in our house of this image in our house - it's quite a nice piece (most people think it's a moon or sci-fi scene, rather than my eye). So I suppose there are benefits to being "unique".
So, what does all this have to do with pregnancy loss and grieving? Well maybe not a whole hell of a lot. Maybe I just thought it was interesting and felt like writing about it. But let me try (even if it's as tenuous as the threads holding that lens in place) to get us back there.
If you've read our post on Genetics, you'll know that my eye condition seems to have been caused by a random genetic mutation. The loss of our baby, and the hell that my wife went through to get us here, was also caused by a random genetic mutation. So when I see Sam wearing his glasses, when people tell me how much he looks like I did at that age*, I feel a pang of guilt, a deflating feeling in my chest, the way I feel when I think about the statistical odds of our molar pregnancy, and the fact that it happened to us.
(*Note - Sam's glasses are much cooler than mine. Whereas I looked like Baby Napolean Dynamite, he looks more like that cute kid from Jerry Macguire )
The death of a child, born or unborn, has this way of weaving itself into everything you do, everything you are. It reverberates through the rest of your life, reminding you of your other perceived failures and weaknesses. When you're buying Salada crackers, you think about when that was the only thing your wife could hold down; when you plan a family holiday, you stop for a moment as you select "Children - 1" for the flight booking. Your loss is nowhere, and yet it's everywhere. That's how I feel when I see my son wearing glasses, like there's something defective in me, like maybe I shouldn't have been allowed to have children, like I'm a faulty robot that needs to be taken off the production line before I screw up another unit.
And then I catch myself. Yes, I'm messed up. But aren't we all? Yes, I'm "defective". But so were loads of inventions that eventually changed the world. I've had a pretty good life - or at least I'm still going, which is a big part of the battle. I've got a pretty darn special family. If I hadn't existed, all of this wouldn't exist (and that includes the baby we lost).
I've read a lot about Stoicism recently, and they have this technique called "negative visualisation", where you imagine the worst-case scenario - if you lost your job, your family, your home. What would you do? How would you go on? I know that sounds a bit grim (hey, you're reading a blog about pregnancy loss - I assume you're OK with grim), but bear with me. When you do this, you quickly realise that while it would suck big time, your life wouldn't actually be over. There are things you could do - move in with a friend, seek help from local charities until you get back on your feet. Ask for help.
The Stoic's point was, in part, to stop us from taking for granted the things we do have, and I've found it useful. I'm not saying you can't be sad or feel down - hell, that's half my week - but that's why I think this technique can be so helpful. When I feel that empty, crushing sadness, the last thing I want is some pep talk about how lucky I am to have one child - that might be right. but it feels false, forced, and just plain wrong. However, I find it much easier to deepen my wallowing by imagining how bad it could really get, and then (eventually) coming out the other side to realise how grateful I am that it hasn't.
So I guess in the end this post is about moving forward. Like my eyesight, my life isn't perfect - but I can find joy in it. I can choose to dwell on the eye I can't see through, and the fact I'll never be able to fly an airplane, or park a car better than my wife, or even see 3D movies properly (and sometimes I do wallow in that crap) - or I can close my eyes, and feel deeply grateful for the fact that I can open them again.
A final note - as we've mentioned before, we are not doctors or mental health experts. Thoughts can be powerful things, especially when you're feeling vulnerable, so whatever you try, be careful, be kind to yourself, and don't be afraid to reach out for help (you can find some links we like in our resources section here. If you're in NZ you can reach out to Lifeline Aotearoa here)
We are a family of 3. This blog is the story of how we almost became 4, why we didn’t, and what we are doing to recover from that experience.